Patient Safety or Payment from a Lawsuit

 

December 23, 2023

The Honorable Kathy Hochul
Governor of New York State
NYS State Capitol Building
Albany, NY 12224

Dear Governor Hochul,

I watched with interest the news that “Grieving families across New York are fighting what they call an injustice”.  The decades old law that limits payouts in wrongful death lawsuits based on the persons age and / or financial worth. https://www.cbsnews.com/newyork/news/new-york-grieving-families-act/

This fight has been going on so long and I for one, lived it when my young son bled to death following a tonsillectomy over 30 years ago.  I didn’t need the money, my son was dead, I wanted answers as to how this happened and without a lawsuit, no one would talk.  There is an important piece missing.  The lawsuit happens after the death.  We need to avoid the death to begin with and one reason I believe death from medical errors are so high is because the public is not prepared to be patients. 

In 1996 we started Pulse Center for Patient Safety Education & Advocacy a small grassroots organization based on Long Island, New York to educate the public to be a support and advocate for each other for the best outcomes in care.  Learning how errors happen (something many survivors want to know) and how to avoid medical injury needs the attention we have never received.  Whether it is for older adults, cancer, lupus, epilepsy, mental illness, disabilities, broken bones or rare diseases, learning patient advocacy can save lives and reduce lawsuits following death or injury. So, while there is a discussion about payment after a wrongful death, please consider the work we have been doing for 25 years to avoid the injuries and death within the healthcare system, by educating the public to begin with.

 

Sincerely. Ilene Corina, BCPA

President, Pulse Center for Patient Safety Education & Advocacy

www.PulseCenterforPatientSafety.org

icorina@pulsecpsea.org

516.579.4711

I Didn't Tell My Children "No"

 

Communication Starts Early

Starting at a young age and even before birth, we communicate with our children.  Verbally or through facial expression, how we communicate with others can trigger happiness, sadness, anger or disappointment.

Babies know when we are happy and they know when we are angry.  Even my dog crawls away when I scold him as if he knows I am disappointed or angry.  So, with that in mind, I get frustrated when I hear parents in the store telling their child “no” you can’t have that toy.

I don’t think I ever told my kids no.  Instead, I asked them how they will pay for the item they cried for.  What will they give up to get that new toy?  Sometimes they would offer to do chores to earn money to buy something or, not wanting to give anything up, they would stop asking for wasteful items.  When I hear parents telling their child “no” without a deeper explanation, it makes the word seem useless.

I also didn’t make my children share.  If I was reading a book and someone asked me for it, should I stop reading it and offer it to the other person?  I never told my kids they must share.  I did say to them “make a deal”.  If you want something from someone, are you willing to wait and ask for it when they are done?  Would one child want to give up an item to another because they are told to?  Won’t that just make them resentful?   I never got between my two boys, 12 months apart if they both wanted a toy or game.  They always worked it out after knowing mom would tell them to figure it out.  Yes, some parents thought I was nuts when I told them my kids were not required to share their items.  I would tell the other parents to suggest their child makes a deal with mine.

When they were old enough to crawl, my kids had chores.  They started off lining up their shoes.  They didn’t have to match and even if there were just two shoes, they needed to be lined up.  Telling my kids to clean their room was wasteful energy.  What is clean to me may not be clean to others.  Instead, if it doesn’t belong on the floor, it needs a home. 

Communication is what makes up relationships, helps in understanding and can predict outcomes.  Good communication can make for the best outcomes.

Even today, the parents of my children’s friends remember I would tell all children playing in my home, when it's time to clean up, each child would find five or ten things to put back where they found it.  I remember one child asked, “is a deck of cards one thing or 52?”

A Hospital Stay in 2023

 

A Hospital Stay

While a close family member was hospitalized for over a week,  I had the opportunity to remember how scary it is for the family (me) and how vulnerable we become at the mercy of the team caring for the patient. 

It would be easy to say this hospital was wonderful.  The nurses were caring and helpful.  They answered questions and came when called.  The doctors performed potentially life-saving tests and procedures to care for my family member, and when asked to explain things again and again so we could capture information and directions, everyone was patient with us.  When I asked the doctor not to say “don’t worry” to me, I was able to collect information and keep communication flowing .  It was a teaching hospital, and my family member would tell me if I missed the neurology class or the cardiac class; all the students would help with information needed to make decisions. 

So what was the problem?  Can I still find a problem after nine days of acceptable medical care?

Yes, and there is a reason I will share some of what I experienced.

The tray tables were never left near the patient, who could not get out of bed.  Each time the food was brought into the room, it was left out of reach.  Even the patient in the next bed, who had no visitors, yelled for his tray table.  Life-threatening?  No. Inconvenient and inconsiderate? Yes.

When an Occupational Therapist put her box of tools on the bed and spread them out, I went and got all new bedding, explaining to the nurse that this was not OK.  The nurse offered to help me change the bedding, as did the OT, but she acted as if this was acceptable practice.  Even putting a towel down over the bedding would have been acceptable.  When I pulled the sheets off,  I found the bed itself was torn and stained.  Life-threatening?  No clue.

I asked the nurses when the last C-Diff infection was discovered on this floor, and they said it had been at least two years.  I responded that that was a good thing, because no one was washing their hands.  No sinks were available except in the patient’s bathroom. Some staff used hand sanitizer before entering the room but not before treating the patient. Everyone wore gloves and some did not use hand sanitizer (that I could see) before putting on gloves.  I never saw the stethoscope being cleaned before use.

I wiped down the chairs before sitting down. Most were dirty. One was in such bad shape it was chipped and torn, and when I wiped down the arms, I got a splinter.  The garbage was emptied daily but the bathroom was not cleaned for the whole time we were there.  The family cleaned it.  When I asked the person who emptied the garbage when the bathroom gets cleaned, he said, “I will find out”. 

Why do I share this?  Believe it or not, its not a complaint.  It is really just a reminder that the family and friends of the patient play an important role in helping to keep the patient safe.  Whether it means cleaning the bathroom, wiping down anything staff may touch and then not wash their hands, keeping notes, or making sure the patient can reach their tray table without falling out of bed, we have a place. Remember to use it!.

Why Donate

Where Does Your Money Go When You Donate?

Each year, all across the country, there are nonprofit organizations looking for funding through donations, events, grants, or sponsorships.  Sometimes we know what they do with the money, such as help pay for cancer research, feed the hungry or build homes for the homeless.  Sometimes we are not sure where the money goes.  The money may support the salaries of the CEO and other staff, the office space needed to conduct business or the equipment for the organization to function.

Still, sometimes blindly, people offer up money to help support a cause they believe in.  Nonprofit organizations need that support to function.  So, as we come to another fundraiser for Pulse Center for Patient Safety Education & Advocacy, as we move out of our 25^th year and keep going, I want to share with anyone who wants to know where your money goes.

We have no salaried staff.  Instead, we have people who get paid for a few hours a week to do some of the important administrative work.  We have never had a paid CEO or Executive Director.  Unless there is a funded project, our President has been a volunteer for over 25 years.

We do not have an office.  All volunteers are virtual, and we used Zoom long before the pandemic.  But, as you know, Zoom costs money, During our yearly symposium, we had as many as 29 volunteers all meeting virtually.

So where does your donation go to?  It helps cover the costs of running Pulse and our three free programs a month that help support people navigating the healthcare system. Also, we need the website, telephone, consultants, and memberships to keep up with what is happening.  These are all important to an organization that has existed for more than 25 years strictly as a support for the people who need us.  We hope you will give as much as you can.  A $5.00 donation helps, as does a $500 donation — because until we can hire a grant writer, professional fundraiser, marketing professional, business consultant or salaried staff, we count on you to help keep our doors open (even if it is virtually).

Thank you for considering supporting the Pulse fundraiser or making a donation. Or, please consider volunteering your time and talents; even if it’s for just two to three hours a month, it matters.

Feel free to Donate Now!

The Union Story

Unions

Many people know that I am now a full-time caregiver for my brother.  This is not how I had planned for my later years, but I am happy to be in his life and able to offer him the care and services he needs.

I work for an agency which pays me.  I report my hours to them and am trained by them.  The past few months, I have been called and emailed by healthcare workers unions. They want the employees of this home care agency to vote to unionize and pay them to “represent” the homecare workers.  The homecare agency is calling and emailing telling us we don’t have to do that, and we can ignore the unions asking for our money.

Yesterday I was visited at my home by a woman. She was in front of my house as I was coming back from a long walk with my dog.  I asked her who she was looking for and she was looking for me.  She asked if we could go under the carport out of the rain.  I said “no”.  I wanted her to go through her speech as to why I should join their union.  I do support unions.  I have always belonged to unions but this one was different.

“So,” I asked her after she went through her presentation.  “Your union will represent me if I abuse my patient, if I steal or I use drugs illegally”?  She looked puzzled and said “yes”.

“Who” I asked her “represents the patient?”

As I originally searched for a caregiver for my brother over a year ago, I said he needed someone in the morning.  They sent people who would only work evenings.  I said he had cats (he no longer does) and they sent people who were allergic to cats.  I said he lives upstairs.  They sent people who couldn’t walk the stairs.  He needs rides to go shopping. They sent people who don’t drive.

I explained this to this lovely woman as we stood out in the rain and asked again, “who represents the patient?”  I invited her in out of the rain to sit at my kitchen table.  She didn’t have an answer.

March 14th Means More Than a Day; Patient Safety Awareness Week

 Patient Safety Awareness Week, I Remember Why

Each year on March 14^th I stop for a moment to remember the death of my son who died because of the care he received (or did not receive) by the healthcare system.  Bleeding for 5 days after a tonsillectomy, Michael died from blood loss and a body full of infection. I believed all 5 doctors who said during that week that he was fine.  But he wasn’t fine.  He was bleeding to death.

As time went on, and as angry as I was at the system I trusted and failed me, I found there was something that made me just as angry nothing to do with the healthcare system.  The people before me, who lost children, didn’t tell me I would survive this.  I did survive.  I didn’t survive my job at the time, my marriage or financially because I chose to find out how something so terrible could happen by the people we teach our children to trust.  

I began to peel back the onion, layer by layer and for the last 25 years found out that when we get to the core of how our healthcare system works, it “stinks”.  Not only because of the confusion to use it, all the different diagnosis, medication, equipment, specialists, payment, insurance, blah, blah, blah, but because we are at our most vulnerable time trying to understand it.  There is so much room for error and if the public is not involved in better understanding how these mistakes happen, they will continue.  People will die and be injured, costs will rise and nothing will change. 

Prepare as a patient.  Do your homework, help a friend, and ask for help.  If you believe something is wrong when you go to the doctor or hospital, trust your instinct, don’t be afraid to challenge it.  And, if you are not respected for your participation, go somewhere else.